Letter From The President
Peek-A-Boo With PKU - A "Behind the Scenes" Look
Tricks & Treats For Halloween
Feeling Hot, Hot, Hot - Central Illinois Picnic
Annual PKU Family Camp
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Fall 1998
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| Can you believe it? The school year is well underway, our kitchen tables are covered with notices, permission slips and requests for our participation as volunteers at any number of events - and hold on - the Holidays are approaching! Before you know it we'll be planning to visit family, decorating our homes and shopping for holiday gifts. It's enough to make anyone's head spin. During my five years of involvement with the PKU Organization, I've noticed something. Parents of children with PKU seem to handle these demands in stride. What overwhelms other families is just another item to add to our never-ending list of things to do. My theory is that we have to be so organized and aware of what our children are doing because of the PKU diet, that we develop keen organizational skills. We not only juggle our jobs, homes, and children - but we also keep track of what they eat, cook from scratch and help our children plan their daily activities so they can drink their super milk and get enough protein (without getting too much). There is no way we can accomplish this without being organized. Those of us who were not very organized before we began living with PKU have picked up some valuable skills along the way. Other 'Type A's have honed their list-making skills to near perfection. |  |
As parents, friends or family of children who live with PKU, our goal is to provide our loved ones with the knowledge and skills necessary to manage their difficult diet on their own. All parents must prepare their children to live on their own one day, but teaching your child to cook, track PHE's, and take their own blood adds another layer of complexity to the task. I think knowing when to ask your child to assume certain diet management responsibilities is extremely difficult. How do you know when to lead and when to follow your child? How do we successfully negotiate this lifelong dance with our children?
This year's Annual Meeting will focus on this difficult issue - teaching our children self-management of the PKU diet. Our keynote speaker, Cristine Trahms of the University of Washington in Seattle believes that it is never too early to start providing your child with the skills he or she will need to manage the PKU diet as an adult. Ms. Trahms will tell us about her clinical program using skill and knowledge based milestones for self-management of the PKU diet . You will learn techniques for helping your child reach the goal of self-management of his or her diet. Our workshops will group families with similarly-aged children together to explore topics related to our keynote address. We are also fortunate to have other speakers including Dr. Pergament, Chair, Illinois Genetics and Metabolics Advisory Committee, which monitors the of Illinois Newborn Screening Program, Sydney Kling of the Illinois Department of Public Health and our Clinic Doctors and Dieticians. By now you should have received your invitation to the Annual Meeting in the mail. I hope if you don't attend any other event this year, you will attend this year's Annual Meeting on November 7, 1998.
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Fall 1998
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Hi, I am J. K. I visit Dr. O'Flynn twice a year at the PKU Clinic at Children's Memorial Hospital. I'll be in the 5th grade in the fall and will only have to visit once a year now. Yeah! (Oops, sorry!) Like all PKU kids, I've had to have a lot of "pokes" and was very happy when the clinic switched from the tubes to the test papers. Have you wondered what the hospital does with your little blood test card? Well, I got the chance to visit their lab and I'm going to tell you all the steps used in testing our PKU blood levels.
We went to the labs which are located in the lower level of the building next door. Everything was high security. The doors only opened if you swiped a special pass through these thing-a-ma-bobbies on the doors, kinda like secret agent stuff. We worked our way to the lab where we met Alan, the guy that tests our blood. He let me help him run the test for one of my test cards, but first we had to put on plastic gloves. Mine didn't fit very well.
Alan first takes the filter card and punches out little circles of the blood. He showed me how to make sure we have a "good sample". If the blood seeps through the card and shows through on the back side, that's a good sample. He usually uses only two of the three blood dots, saving the third in case the test needs to be redone for any reason.
Next, Alan takes those circles and cuts them in half. He had me pick up the pieces with pointy tweezers and put them in a little plastic tube that looks kinda like the ones we used to mail our samples in. He adds some kind of acid and holds the tube on a machine with a shaking pad for a few seconds to mix it up real good.
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Then, Alan takes the shaken up blood and puts it in a tube rack that he puts on another moving thing-a-ma-jig that moves back and forth. It has to do that for a whole hour! Alan explained that he usually does a lot of tests at one time, so the rack is often full when it's in this jogger thing, otherwise it would take forever if he did everyone's test one at a time! To save time during our visit, Alan had already done all this using an old blood sample of mine, so we didn't have to wait before moving on to the next step. |
After an hour on the jogger, the blood turns to a clear solution because of a chemical reaction with the acid stuff (cool!). Alan takes the clear solution and uses a syringe to suck it up and get the blood into a tiny little tube coiled on a clear disk. Then the disk is put into another rack. This rack looks like the circle rack from a slide projector. It can hold a lot of disks with the coiled tubes. The rack is put into the "Beckman System 6300 High Performance Analyzer". This is the machine that tests the blood samples. Alan said that there are only a few of these in the whole Unites States, so he gets very upset if it breaks down. But it doesn't do that very often.
The 6300 is about the size of my mom's washer and dryer next to each other. The one side opens up on top like a washing machine. That's where the circle rack is put in. The front panel on the other side opens like a door. This is where a lot of chemicals are hooked up by tubes and things. During the tests, these mix with the blood solution that's in the coiled up tube. It takes 25 minutes for the blood to go through the whole machine because the machine is also automatically testing for other stuff, but we're only concerned about the phe level.
You're probably wondering, after all this, how does Alan know the phenylalanine level? Well, I'll tell you then. There's a computer hooked up to the machine that shows the test results on a graph with a blue line. It's the very last bump (or hill) on the graph that shows the Phe level. When the tests are done the computer numbers the chart and above the last hill or bump it tells Alan how much phenylalanine your blood had. Alan records the number and gets the information back to Dr. O'Flynn and Rhoda's office. Then they call us!
While we were waiting for the 6300 to finish the tests on my sample, Alan took us for a little walk to another lab. In this lab, people were looking at chromosomes. Do you know what your chromosomes are? These are the things that carry the genes that make us what we are - blonde or brown hair, blue or green eyes. We got to see some chromosomes on the computer screens. They look a little like the letter "X". Everyone has 23 pairs and it's the last pair that determines if you come out a boy or girl. Two big "X"'s make a girl and a big "X" with a little "y" make a boy. It was really neat! Do you know which chromosome carries the gene for PKU? I do! It's on chromosome number 12!
I really enjoyed my visit to the lab and every month when we send in my test paper, I write a little note, "Hello Alan!" on it. But something really exciting happened when we were leaving. The parking garage was very full so we had to park on the roof level. When we were walking to the car, a helicopter landed on the helipad on top of the hospital and we got pictures! Some people got on and then they took off again. It was really loud, but cool!
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Fall 1998
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| A few years ago at one of our Annual Meetings, R. Mc. was kind enough to prepare a list of quick and easy ideas to make Halloween a bit more special for our little ghosts and goblins. We reprint those ideas again here with a special thank you to her. We also added some ideas to make these recipes adaptable to the coming Christmas holiday as well. |  |
Jack O- Lantern Ice Cubes
Buy a small pumpkin pan at a craft or hardware store and fill the
pumpkins with orange juice, orange Kool-Aid or orange Tang.
Freeze and use with glasses of 7-Up, Sprite or ginger ale for a
nifty treat.
Christmas Version: Use Christmas tree or other holiday
pan and fruit punch, red Kool-Aid or other red drink.
Grilled Pumpkin Sandwiches
Buy large pumpkin cookie cutters and cut pumpkin shapes from your
child's favorite low protein bread recipe. Fill sandwich with low
protein cheese, low protein cheese sauce or Campbell's cheddar
cheese soup, spread butter on the outside and grill.
Christmas Version: Use Christmas cookie cutter such as
snowflake, tree or gingerbread man.
Pumpkin Pancakes
Use the same cookie cutter and prepare your child's favorite
version of low-protein pancake batter. Place the cookie cutter in
the center of the skillet (be sure it won't melt!), pour batter
in the middle and cook until done. Top with apple or maple syrup
and watch your kids gobble 'em up!
Christmas Version: Use Christmas or other holiday cookie
cutter, add red or green food coloring and top with
confectioner's sugar and non-dairy whipped topping for a sweet
treat.
Spider Candies
Melt chocolate-flavored Ann Sather's almond bark and mix in chow
mein noodles (One Tablespoon equals 12 PHEs), drop by
teaspoonfuls into a small baking cup and top with Halloween-type
sprinkles.
Christmas Version: Top with confectioner's sugar, use
Skittles instead of chow mein noodles.
Boo Pops
Purchase plastic Halloween candy molds and lollipop sticks in
ghost and pumpkin shapes (available at Frank's Nursery, Lee Wards
and other craft stores) and fill with melted Ann Sather's white
almond bark to make small candies and lollipops.
Christmas Version: Use Holiday molds - Christmas trees
or wreaths make good choices.
The nice thing about these recipes (besides being easy) is that
they are also great for the non-PKU goblins (or angels) as the
case may be in your house, and friends or classmates.
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Fall 1998
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What do you get when you combine 90+ degree weather, high humidity, and 43 people with a common interest? A GREAT TIME and GOOD FOOD. July 18th was the date for this year's Central Illinois Picnic. Nine PKU families were represented along with 3 members of the U of I clinic staff (and two very young men accompanying them). We were very glad to have one of the newest families attend.
The pre-meal activities consisted of the children having a lot of energy and playing on the playground with each other. The less energetic, but far wiser, adults sought out the picnic tables under the shelter with a cool drink. Lunch time followed with quite a selection of PKU food. Some of the PKU dishes were: Mexican Quiche, Pistachio Fluff Fruit Salad, Bean Salad, Bread with sandwich fixings, LoPro Pretzels, Banana Bread, Banana Pudding, Butterscotch Chip Cookies, and Chocolate Chip Bar Cookies.
During lunch, there were introductions and a review of the upcoming organization events. After lunch it was game time with Chicken Limbo, water balloon toss, a water relay race, and hula hoops. The games involving water seemed to be a hit with the group.
Many thanks to the hosts for their work organizing the picnic. Also our appreciation to the U of I clinic for their work with the mailings, contacting families about the event, and taking the time to drive down from Chicago for the picnic.
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Fall 1998
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The weather could not have been better for this year's PKU Annual Family Camp held Saturday and Sunday September 19-20 at East Bay Camp in Hudson, Illinois. Blue skies and 80+ degree temperatures set the stage for an awesome 2 days in the great outdoors. Approximately 70 people attended including PKU families from all over the State. We had a new family with a 2 month old baby, lots of repeat campers and a few first time campers. A long time camp participant and his grandmother even paid us a surprise visit - it just wouldn't be Camp without this family! |
Saturday activities included delightful crafts. Campers were able to create personalized visors and flower pots using an endless variety of glitter, glue, paint and foam board. Campers enjoyed the lake on pontoon boat rides and played in the sand on the beach. Parents spent their time getting to know each other while kids of all ages played games and explored the grounds. A delicious dinner was followed by hayrides at dusk. Later in the evening a DJ entertained us in the Rec Center. Teenagers made their parents feel old as they showed off the latest dances. The evening ended with a campfire, lots of roasted marshmallows and sticky, tired faces.
Sunday morning brought more sunshine, more food and lots of games. We must report that the girls beat the boys twice but the men (parents) beat the women handily in a spirited tug-o-war. Three-legged races, a water balloon toss and relay races rounded out the games. Everyone was a winner! The PKU Organization ok Illinois would like to thank a special family for helping to make the annual Camp a "PKU Institution" over the years. We also want to thank our everyone involved with organizing this year's camp, assisting with planning, creating the menus, answering many dietary questions, purchasing much needed supplies and planning crafts, running to the store for coolers, planning the games, and all parents who contributed food, supplies and good cheer!
We know that it is difficult to set aside an entire weekend for an event like this, but it is a worthy investment. Our PKU teenagers spent valuable time with each other and their younger PKU pals. This type of extended interaction is invaluable and makes a lasting impression on the kids and their parents.
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Fall 1998
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